RWJF Physician Faculty Scholar finds that most states are not able to provide the recommended level of treatment for the growing number of children diagnosed with Autism Spectrum Disorders.

A few years ago, C. Jason Wang, M.D., Ph.D., learned that a friend had been shelling out more than $100,000 a year to cover therapist expenses for his young autistic son.

Wang was shocked. He wondered why these critical services aren’t covered by the government, which has set aside funds for early intervention and education programs for children with autism and other disabilities. And if his friend, a fellow physician, was struggling to pay for these kinds of programs, how could lower-income people manage?

An assistant professor of pediatrics and public health at Boston University and Boston Medical Center and a Robert Wood Johnson Foundation (RWJF) Physician Faculty Scholar, Wang decided to find out.

With funding from the Foundation, he surveyed coordinators of federally funded early intervention programs around the country about their ability to meet demand for evaluations and services for infants and toddlers suspected of having Autism Spectrum Disorders (ASD), which includes autism, Asperger’s syndrome and pervasive developmental disorder.

Studies show that early, intensive treatment for children under the age of 3 may help improve functioning. Yet most early intervention programs, Wang found, are unable to meet the demand for the recommended level of services, leaving countless children without access to adequate therapy during a critical period of growth and development that may offer their best or only chance to reduce the severity of the disorder.

Low-Income Children Suffer Most Profound Effects of Inadequate Services

The lack of adequate services has the most profound effect on low-income children because they rely more heavily on government-funded programs for treatment. “The safety net for poor children with autism spectrum disorders is frayed,” Wang said. “Many of these children do not have access to the kind of help they need during the critical window when they may be able to overcome the otherwise lifelong effects of autism.”

The shortage is expected to worsen as ASD diagnoses rise and in response to a 2007 recommendation by the American Academy of Pediatrics for universal screening of 18- and 24-month-old children. As demand for evaluations and services grows, the supply of providers may shrink due to state and local budgetary pressures that have intensified during the recession. “In terms of demand, the floodgates haven’t even opened yet,” Wang said.

The findings of the study, “Can State Early Intervention Programs Meet the Increased Demand for Children Suspected of Having Autism Spectrum Disorders,” were published in the July issue of the Journal of Developmental and Behavioral Pediatrics.

Of the 52 early intervention coordinators from U.S. states and territories who responded to the survey, most said they are not able to provide the 25 hours of treatment a week recommended by the National Research Council. Sixty percent of the respondents reported the number of service hours they provide; of those, nearly half (44 percent) said children with an ASD diagnosis receive five or fewer service hours a week. Only four states provide more than 20 hours of services a week for children diagnosed with ASD.

Respondents said the main reason for states’ inability to meet recommended levels of service is a shortage of staff, which many said is due to inadequate funding. Federal and state governments, Wang said, need to allocate more funding to ensure that all children—regardless of their background—receive the treatment they need to reach their potential.

Otherwise, Wang warned, children will continue to get an “underdose” of therapy. “Early intervention,” he said, “is like an antibiotic. Children are not going to get better if the dosage is too small. Governments need to follow the doctor’s orders and give states the resources to provide an adequate dose of treatment for all children.”